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. 2018 Jul 6;2(1):27-30.
doi: 10.1017/cts.2018.16. eCollection 2018 Feb.

Development of a plain-language library of educational resources for research participants

Elizabeth Witte  1 , Sabune J Winkler  1 , Joanna Myerson  1 , Aaron Kirby  2 , Jessica Biggers  1 , Jacquelyn-My Do  1 , Mary-Tara Roth  3 , Alyssa K Gateman  4 , Enrico Cagliero  1   5 , Barbara E Bierer  1   6
Affiliations

Development of a plain-language library of educational resources for research participants

Elizabeth Witte et al. J Clin Transl Sci. .

Abstract

There is a paucity of educational resources for potential clinical trial participants, particularly resources in plain language, attentive to health literacy principles and translated into native languages. The New England Research Subject Advocacy Group was formed to explore common issues, interests, and concerns related to the experience of participation in clinical research and research participant safety. Specifically, the group sought to increase community awareness and trust through the development and distribution of publicly accessible informational resources. In support of these aims, the group developed a robust library of high-quality, plain-language educational materials covering topics in health research, research participation, and common research procedures, and translated the majority of the materials into an additional 15 languages. These resources have been downloaded over 130,000 times. After English, the most common languages downloaded are Vietnamese, Spanish, and Korean.

Keywords: Clinical trial recruitment; clinical trial educational resources; health literacy; research participants; research subject advocacy.

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Figures

Fig. 1
Fig. 1
Agile development of Research Subject Advocacy (RSA) materials. CTSA, clinical and translational science awards; NE RSA, New England Research Subject Advocacy.
See this image and copyright information in PMC

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